Press Release: Addison's Disease and Adrenal Insufficiency: At least 1785 people in UK unable to self-manage COVID-19 to reduce the burden on the NHS

Addison's Disease Self Help group (ADSHG) Members and followers on social media were asked if they had made the charity's recommended emergency preparations.

With their Adrenal Glands no longer working, people with the condition are unable to make enough cortisol, aldosterone or in some cases, DHEA (dehydroepiandrosterone). These vital hormones regulate blood pressure, blood sugar, electrolytes, stamina and more.

Around 12% of the 580 members we surveyed do not have at least 1 month's reserve of tablets above their monthly prescription dose.

When it comes to emergency kits, 21% of those surveyed have either a partial injection kit or no kit at all. On this basis of an estimated 8.5k people with primary adrenal insufficiency in the UK, it's possible that around 1785 people are currently without the 30 days worth of extra medication or injectable drugs, syringes and needles they might need if ill or in crisis. Of the estimated 9900* people with secondary adrenal insufficiency in the UK that could equate to around 2100 without their full kit.

ADSHG Chairman Andrew Glass said "Our main aim for the ADSHG as a Charity during the COVID-19 outbreak is to ensure that our members are correctly enabled by their Endocrinologists or GPs, to be able to self-manage if they get ill with mild COVID-19 symptoms. This preparation helps them to reduce the burden on the NHS and HSE and save lives. The ADSHG's been following the Covid 19 outbreak closely and working with our membership to achieve this."

The ADSHG recommends that people with Adrenal Insufficiency are given the emergency medical supplies they need to self-manage an adrenal crisis coupled with COVID-19:

  • At least 30 days reserve supply of steroid medication
  • At least 1, ideally 2 sets of injectable steroids (100mg Solu-cortef (hydrocortisone sodium succinate and 2ml water for injection) or 100mg hydrocortisone sodium phosphate)
  • At least 1, ideally 2 syringes (2ml) or 3ml vanishpoint syringe
  • At least 2, ideally 4 needles (if not vanishpoint syringe) - (21G (green hub) or 23G (blue hub) ideally)

The ADSHG requests that Endocrinologists and GP's prescribe patients with Addison's Disease or Adrenal Insufficiency, the additional medication and injectables, needles and syringes to help these patients self manage the adrenal-related consequences of a case of COVID-19 at home and reduce the burden on the NHS.

The ADSHG founded and marks International Addison's Day every year on 29th May. This year's theme, 'Being Prepared' will see the charity involving the global Adrenal Insufficiency and Addison's Disease community in a day of raising awareness, lobbying and sharing life-saving advice for emergencies.

The ADSHG was founded by Deana Kenward who began the group with an advert in a magazine back in 1984. The group has grown since to around 1800 members, achieving much to improve the treatment of people with Addison's Disease and Adrenal Insufficiency in its 36 years.

Addison's Disease Self Help Group

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Emergency kit box being used on the go:

ADSHG Preparedness Survey - Graph of ADSHG Member readiness:

ADSHG Injection kit box: